Autistic spectrum conditions

Headlines

1 in 100 children are estimated to have an autistic spectrum condition (ASC), equating to around 980 children in Kirklees. There are no studies that detail prevalence in adults.

Considering assets, people with ASC, together with their carers, have formed strong support networks. People have also often found their own solutions to problems.

Why is this issue important?

Autistic spectrum conditions (ASC) is an umbrella term for certain complex lifelong neurological developmental conditions. It may include autism, Asperger’s syndrome, atypical autism and pervasive development disorders. These conditions can be difficult to diagnose as different people suffer different levels of symptoms. Generally ASC are characterised by symptoms including atypical behaviour in:

social interactions

verbal/non-verbal communications

repetitive behaviours which are often rule governed11111.

People with ASC may experience multiple issues that inhibit their potential to live rich and fulfilling lives. The needs of those with ASC are not well understood either personally or demographically. The National Autistic Society (NAS) estimates that 1 in 100 children have an ASC. This equates to approximately 980 children in Kirklees. No studies have been done to identify prevalence in adults. The NAS also suggest that only 38% of people with an ASC have a community care assessment, that only 9% are receiving social skills training, and only 15% of adults are in full-time employment1.

Autism development and traits are inheritable, but about 1 in 10 cases may occur by chance. ASC can be a primary diagnosis or form part of other genetic conditions, such as Rett syndrome or Fragile X syndrome2.

A Social Care Institute research paper in 20103 set out the following major issues for those with ASC:

There are differences in needs between individual adults with ASC so the “one size fits all” approach generally does not work.

Many people with ASC experience unemployment, mental and physical ill-health, discrimination and social exclusion.

The evidence base about services that work or not for people with ASC is weak.Individuals with ASC and additional intellectual disability generally have fewer problems in accessing support, as it is often provided by local learning disability services. However these services may struggle to support individuals with additional or complex needs.

The condition and needs of more “able” individuals with ASC may go unrecognised or be misdiagnosed.

Few health or social care workers have sufficient skills or experience for assessing or working with people with ASC.

Research is needed to investigate the lower take-up of social and healthcare among people from minority ethnic and cultural groups, women and older people with ASC.

What significant factors are affecting this issue?

Diagnosing ASC can be difficult and complex. More boys than girls are diagnosed with ASC, approximately four boys to every one girl. However girls diagnosed with ASC tend to suffer more severe symptoms4. This may be a result of the tests used for diagnosis which are based on boy’s behaviours rather than girls.

People with ASC are particularly vulnerable to mental health problems such as anxiety and depression, especially in late adolescence and early adulthood. However poor verbal communication about feelings by those with ASC can make it difficult to diagnose mental health problems5.

People with ASC can be excluded from the labour market and denied access to mainstream support options. The NDTi report6 confirmed that reasonable adjustments in services were not always in place. This can inhibit people with ASC accessing support.

Considering assets, people with ASC, together with their carers, have formed strong support networks. People have also often found their own solutions to problems.

Views of local people

The ASC strategic oversight group, alongside the ASC forum have collected messages which echo the issues set out in national and local policy.

What could commissioners and service planners consider?

The national strategy8 sets out a number of key actions and recommendations for central Government as well as for Local Authorities, the NHS and Jobcentre Plus, focusing on five key areas:

Increasing awareness and understanding of autism.

Developing a clear and consistent pathway for diagnosis.

Improving access to the services and support people need to live independently within the community.

Employment.

Enabling local partners to develop relevant services to meet identified needs and priorities.

Support implementation of the local commissioning strategy9, which is designed to:

Improve the overall wellbeing of people with ASC in Kirklees.

Improve the quality and accessibility of support for people with ASC.

Achieve the highest level of independence and self help within communities by utilising the strengths of support networks.

Ensure that the workforce is equipped to respond sensitively to the needs of people with ASC.

Develop the market so that high quality, flexible and responsive support is available for personal budget holders and people who wish to pay for their own support.

Ensure that people with ASC have access to information and advice to make good decisions about their care and support.

Involve people with ASC in the design, delivery, and evaluation of services.